A Study to Learn How Stargardt-type Eye Conditions Progress in Children and Adults (NCT07425574)
An Observational Study of Natural Disease Progression in Participants With Macular Dystrophies Expressing a Stargardt-type Clinical Presentation
🩺 Plain-English Summary (8th-Grade Level)
Macular dystrophies are a group of inherited eye conditions that affect the macula. The macula is in the center of the retina, the light sensitive part at the back of the eye. In people with macular dystrophies, some of the cells in the macula gradually stop working and may die over time. This leads to vision loss in the center of the eye. Side vision (peripheral vision) is mostly unaffected. Stargardt disease (STGD) is a type of macular dystrophy which is caused by 1 faulty gene (ABCA4). Vision loss most typically happens in childhood, but many people do not develop it until they are adults. As well as STGD, there are other macular dystrophies that look very similar to STGD but that are caused by many other different genes. Together, STGD and STGD-like conditions can be called STGD-type macular dystrophies. This is because they look the same clinically and have similar symptoms. Since different genes can cause these conditions, genetic testing is the only way to be sure which specific condition a person has. In this study, researchers want to learn if the disease progresses in a similar way in people with STGD and STGD-like macular dystrophies. People taking part in the study will continue to manage their condition, as agreed with their own doctor. People will visit their clinic every 6 months to have various standard eye tests and imaging. The information collected will include questions about people's wellbeing, general health, medication and supplements taken, and daily activities. Children over 6 years old and adults with STGD-type macular dystrophies may take part in this study. They will be in the study for up to 24 months (2 years). The study sponsor (Astellas) will not decide how people's condition is managed. However, the sponsor will provide instructions on when people visit their clinic and what is recorded during the study. If available, medical records, clinical and imaging data from previous visits going back 24 months will also be reviewed.
Who can join: Review the eligibility criteria below.
Location: Associated Retina Consultants — Phoenix, Arizona
Age range: 6 Years
🧪 Interventions in This Study
- No Intervention (OTHER)
📋 "Do I Qualify?" — 1-Minute Self Screener
Instant ChecklistFull eligibility criteria are available on the official NIH protocol. View the criteria ↗
📍 All Participating Trial Locations (15 Sites)
- Associated Retina Consultants — Phoenix, Arizona
- Stanford University School of Medicine — Palo Alto, California
- University of California Health - UC Davis — Sacramento, California
- University of Florida Health - UF Health Jacksonville — Jacksonville, Florida
- University of Miami Health System - Bascom Palmer Eye Institute — Miami, Florida
- University of Illinois Chicago - UI Health — Chicago, Illinois
- University of Michigan Health - Kellogg Eye Center — Ann Arbor, Michigan
- Deep Blue Retina — Southaven, Mississippi
- Duke Eye Center — Durham, North Carolina
- Cincinnati Eye Institute — Cincinnati, Ohio
- Casey Eye Institute - Oregon Health & Science University — Portland, Oregon
- Wills Eye Physicians - Mid Atlantic Retina — Philadelphia, Pennsylvania
- University of Pittsburgh Medical Center — Pittsburgh, Pennsylvania
- Retina Foundation of the Southwest — Dallas, Texas
- University of Utah Health - John A Moran Eye Center — Salt Lake City, Utah
📞 Contact the Study Coordinator
Phone: (800) 888-7704
Email: Astellas.registration@astellas.com
Coordinator details come directly from the registered NIH protocol. Confirm the study is still recruiting before traveling.
💰 Cost, Insurance & Patient Rights
- 100% Free Items: The investigational treatment and protocol-required procedures are supplied at zero cost by the sponsor.
- Routine Patient Care: Under federal law (ACA § 2709) and many state statutes, routine care costs are covered during participation.
- Voluntary Participation: You may withdraw at any time without affecting your standard medical care.
More studies in Stargardt Disease
- An Observational Study in Children and Adults With Stargardt Disease — Dallas, Texas
- Non-interventional Long Term Follow-up Study of Participants Previously Enrolled in the STARLIGHT Study — Miami, Florida
- Open-Label Extension: Tolerability and Effects of ALK-001 on Stargardt Disease (TEASE) — Phoenix, Arizona
- A Phase 2/3 Trial to Assess the Efficacy and Safety of OCU410ST for Stargardt Disease — Phoenix, Arizona
- Phase 1/2 Open-Label Dose-Escalation Study to Evaluate Safety of a Single Intravitreal Injection of RTx-021 in Patients With Stargardt Disease — Bakersfield, California
- Study to Evaluate ACDN-01 in ABCA4-related Stargardt Retinopathy (STELLAR) — San Francisco, California
Explore by condition: All Stargardt Disease clinical trials
💡 How to Participate
- Check the checklist above to see if you may qualify.
- Contact the study coordinator using the phone/email above.
- Ask about the visit schedule, what is covered at no cost, and any travel support.
- Confirm with your own doctor before making a decision.